Alzheimer's, anticipatory grief and the very long goodbye

[JustJane73]

It's so depressing and utterly exhausting.

My dear mum has Alzheimer's. She was diagnosed back in 2018 and from that time we obviously knew she'd never get better. The first few years weren't too bad. Sadly she already had a pacemaker due to heart issues and was bent over with osteoporosis, this has only worsened over the years.

She is now in the advancing stages of the dementia but thankfully stays her same kind, smiley, joyful self and still knows who we all are (but it is starting).

Last year a breast cancer diagnosis blindsided us and I thought she was on borrowed time then but the medication is keeping it at bay and even shrinking her tumour. The breast oncologist is happy with everything.

Sadly, two weeks ago she took a fall and alongside several smaller injuries she has fractured her neck. It was all very much doom and gloom in A&E and I thought she was a on her way out then but a two week stay on a ward and we are now told she should be ok if she keeps her neck brace on for a further 6 weeks. We are now trying to get her discharged but as she will need a care package this is taking forever to arrange so we are really not sure when she'll come home. It's a nightmare getting any answers from staff at the hospital.

I fear this is the start of the end though. I just can not see how her poor, frail 82 year old body and mind can put up with much more.

Every time we face a set back I fall deeper into this long goodbye, this anticipatory grief. It's so draining. I am so depressed, so low and feel rotten every day. My decades long IBS is in overdrive, I have a poorly stomach every day, feel nauseous every day and really rotten. I just want to lay in my bed and sleep all day long.

I hate dementia it is truly wicked. I despise what it's done to mum, my poor dad and my sister and I. I hate the thought of losing the one person who always had my back, my lovely mum who I class as one of my best friends. I sob every time I think about her.

It's been such a long drawn out pain and it's still not begun. We've still got the 'proper' grieving to face one day.

How do you push yourself through the dark days when you know what is to come?

This is so hard for you all, I’m so sorry

I wonder what support you have. Have you talked to your GP about your feelings? Do you have a Maggies Centre within reach? In my county there’s the Dementia [County] charity which by all accounts is great.

When my mother in law was diagnosed with Alzheimer’s there was a patch of time when she let go of all the worries that had dogged her all her life and lived in the present. I’m the opposite of a Pollyanna type but I hope sometimes you find that you can a bit of stability and peace.

I’m so sorry. We are at the start of this. My dad is mid stage I guess? He’s very confused, doesn’t know where he is or understand what is going on, but he knows who family are. I realise I’ve had my last conversation with him and am grieving my clever Dad. Like you we will then have his actual death to deal with.

it is a terrible illness. I hate it so much.

Hello,
I feel for you. My dad has dementia and has recently gone into supported living. This has helped tremendously in terms of taking some of the worry away - but certainly not all of it. We have been helped by contacting our local dementia hub for support, also you can book an online appointment with an Admiral nurse via Dementia UK. I would speak to your GP as previously suggested because this may well be the most difficult time of your life and you need support to get through. Also this might help you enjoy moments of time with your lovely mum. Wishing you well, it’s so so tough. X

Thank you.

I don't think we have a Maggie's centre nearby but we are in contact with the Admiral Nurses, they are so helpful.

I have to say the one (probably the only) positive about Alzheimer's is that mum does live in the moment. She has spent a lifetime as a worrier and had poor mental health at times but is blissfully unaware of things these days and always smiling. So I do need to be grateful for that small mercy.

I'm so sorry you are on this journey too ❤️

Thank you. I am sorry your dad has this too ❤️, it's really tough but good to hear he is doing well in supported living, that must take a weight of worry off your shoulders.

Until the fall mum was going to a day centre twice a week, they are so good with her there. I just hope and pray she can go back to it.

We also speak to the Admiral Nurses regularly, they are so helpful.

My GP isn't much help tbh. They can only seem to offer antidepressants I have tried several different ones but they very much upset my IBS.

OP it's such a sad journey, I'm sorry.

What makes all forms of dementia hard is that it's difficult to understand how they experience things and process thoughts. One minute you're worrying that they might be missing you, the next minute they seem quite happy where they are and seem to have no sense of time (which is probably a blessing).

No advice to offer really, except to make the most of the "living in the moment" aspect of this terrible disease, however trivial it might be. Like 10 minutes in the garden of a nursing home, or a minute's hug and "I love you."

Easier said than done, but try to live in the moment for yourself too. I completely understand the anticipatory grief, but the odd thing is how life clings on, a bit like those trees you see that have been hit by lightning and somehow still manage to grow through concrete. There might be a rollercoaster of "this it is!" / "oh, no it's not" in the time ahead. There's no easy way to deal with it, but please remember to be kind to yourself too.

My local carers support agency provided counselling services for me and it was very helpful. My mum has it too.

I lost my beloved Mum to Alzheimer's just days before Christmas...
Still painful to think about..
I'm very sorry you are going through this...

@JustJane73 it’s very hard. I feel like I grieve a little everyday for my beautiful MIL taken by Alzheimer’s. She has other health concerns too, and I hope one gives her a gentle end before the final stages. Each smile is everything, all you can do is take those moments and cherish them. It just empties you though, doesn’t it?

I lost my mum to dementia just before Christmas. Basically we lost her one day at a time slowly for years, with the last 6 being hell as she had no idea who we were, or where she was, and gradually lost all ability to do anything until there was a shell of a person in a wheelchair left. She would have hated it, but thankfully - I suppose - she lost the ability to be aware of that. In that sense dementia is far worse for the loved ones. I’m so sorry op.

i feel this so much, I’ll never have another proper conversation with my mum and I feel awful about the way I sometimes acted towards her knowing she wouldn’t leave me but now she has. It’s the cruellest illness and takes the person emotionally and mentally first.

I'll look to see if we have anything like that, thank you.

I'm so sorry for your loss ❤️

I'm so sorry op, it's so difficult. My mum, mother in law and father in law all died within 20 months. My mum died 3 months from a cancer diagnosis and my fil just four weeks from his. My mil had been ill for ten years and had dementia and my god that was the hardest out them all. It's heartbreaking to start losing them when they are here and then the multiple other illnesses and infections that come on top of it. You want it to end then you feel guilty for feeling like that. Keep talking and reaching out to people it really does help to offload.

It really is hideous. You have my upmost sympathy @JustJane73 and your beautiful mum.

These illnesses cause everyone who loves the person to suffer from it too. We have just been through this process with my husband’s mother, with another degenerative condition, who is my children’s only close grandparent and it was hideous beyond belief. The suffering is immeasurable for everyone.

Take care of yourself. You matter too.

I'm sorry you are going through this too, my heart genuinely sobs for every dementia sufferer and their loved ones. All the ladies on mum's ward have dementia and fractures/breaks of some kind. I hate going there and seeing them struggling, none of them understand what's going on.

As much as I dread losing my dear mum I too secretly pray for a gentle ending from something else before the Alzheimer's sticks it's final nail in.

I agree, it really is so painful for the loved ones. In many ways mum is living in some kind of ignorant bliss which is ok for her, I suppose but it's slowly destroying dad, dsis and I.

I'm so very sorry for your loss.

Dear JustJane73
My father died a few weeks off 96 after a 10 year decline with mixed dementia (Alzheimer's and vascular). I know exactly what you mean about pre-grieving and the long loss of your parent's personality.....the long goodbye. If I can give you any comfort at all, when he actually died, I felt a calm, quiet grief that has slowly faded in the 5 years since. No shocks or peaks of grief. I did most of my grieving before he went and was relieved when he finally died and his confusion was over. Sending you my sympathies during your hard time. Xx

Thank you.

That's exactly how I feel about it all, the guilt from some of my thoughts surrounding the dementia leave me feeling so guilty.

I'm sorry for all of your losses, that's a lot to deal with in a short space of time. My MIL passed away a few years ago. FIL has been told his health condition may take his life within a year. It's all so stressful.

Getting old is no fun 😔

Thank you Huggersunite

bluestripeymug thank you. I'm sorry for your loss but it's comforting to know it was peaceful, I can only but wish that for my dear mum too 🤞

A bit of a different situation to yours. My M diagnosed with dementia around the start of the year (had been obvious before that though). But really long background of mental health disorders. We had difficult and almost non-existent relationship.

What I am struggling with is the loss of hope. I am currently clearing out her house and it is filled with papers of her ramblings when she was feeling down. Much is incoherent, a lot very distressing. It is not the first time I have had to 'tidy up' after her when she has been unwell. But this time it is so much worse. I had always hoped she would get better, get help, take her medication level out. For her, as much as for me. Now I know that won't happen. And I am so very sad about it all. It is no way to live a life, even worse a way to go.

Before this I had 5 years anticipatory grief for my DF. Too much to go into here but another life-limiting, weakening disease.

I am exhausted. I know what you mean. And I am sorry for anyone going through this too.

OP I’m really sorry about your mum. All sounds very tough and this is such a hard journey to undertake. you have my sympathy. It breaks your heart, it’s such a cruel disease.

My beloved late grandmother (not my mum I know but she brought me up practically and was more like my mum to me than my actual mum so I grieved as though she was) was diagnosed with Alzheimer’s in 2022, but there had been several years prior to that that things weren’t ‘right’ with her, very gradual changes but looking back lots of odd behaviour and increase in anxiety and panic attacks. She’d always been so vivacious and outgoing even into old age and lived independently but gradually stopped doing things that had always given her pleasure - her garden, taking the bus for the day out somewhere, meeting friends- but over time that all stopped. We just thought it was a worsening of her depression and anxiety as she had always had mental health issues and she was very adept at masking her illness even from professionals as she was so bright and intelligent so she wasn’t diagnosed until mid - late stage.

She went into a care home last few years and slipped away peacefully in her sleep last September at 87.

I miss her everyday. The anticipatory grief was the worst part and difficult to explain to others, it was several years of knowing she wasn’t going to get ‘better’ and facing the fact she was declining- I missed being able to call her up and chat for hours and she would always listen and her zest of life. seeing such an intelligent woman decline that way was so tough - she remained very aware even to late stage of her illness that she wasn’t right and would say her brain was broken.

It was all the little things- seeing her in a care home, going into her empty house knowing she would never live in it again that was heartbreaking and each stage unexpectedly would bring a massive wave of grief and also lots of massive feelings of guilt and past regrets from me.

I would say just be kind to yourself, and lean into the grief- if you find yourself incapacitated with it and sobbing one day, just go with it. Don’t be afraid to seek support from friends, other family and a therapist.

The grief hit me hard when my nan did pass away and I ended up taking time off work, the first 6 months I would say were awful, but 10 months on I no longer have that crushing sense of raw grief and can start to think of her with fondness without breaking down every day as I was in the early days. It still catches me off guard and will always hurt and ache but it does get easier over time. I know it’s a cliche but it does.

I am sorry you are going through this Lastknownaddress, it is so very exhausting, I agree.

Realist123, that was so beautifully written, I am sorry for your loss. I still miss both my nan's who passed away 20 and 30 years ago. I would love to have one more conversation with them and hear their voices.

With my mum I also got to the stage of wanting it to end as I was physically caring for her as she declined quickly, but not wanting to lose her as she was only 65. I actually had some bereavement counselling before she died. It really helped me, it was through a local cancer charity. I wonder if there's any local charities that support family members of people with Dementia near you that you could reach out to for support? Try not to feel guilty for feeling how you feel, it's entirely normal and common, easier said than done I know.